Good Morning Lovely People, we have 58 days left until the Hydrocephalus walk in Ft.Lauderdale, so from now on I will be flooding your TL with information on Hydrocephalus so that we can get donations & people to come out and walk with us. As most of you know my son, Jordon was born prematurely and because of that he had an Grade 3 & 4 brain bleed which then lead to Hydrocephalus (water in the brain). We all have cerebral spinal fluid in our heads to stop our brains from hitting our skulls, when Jordons brain bled it then clotted & basically formed a scab in his brain, which then blocked his cerebral spinal fluid from being passed along like it should so it sits in the ventricles (where it is made) and gathers up and pushes his brain into his skull causing a enormous amount of pressure and eventually brain damage. The only way to alleviate the excess fluid is brain surgery which Jordon did at 2 weeks old (2 pounds 15 ounces), to implant a reservoir in his brain which the doctors then came by daily and drew whatever amount of fluid they felt like was extra out of the reservoir, with an butterfly needle. Jordon did that for 2 months before the doctors decided he was going to need something more permanent. So he did a second surgery (at now 4 pounds 3 ounces) called an ETV. This surgery has a 33% success rate only 80 babies in the whole United States has done it and it has failed with in a year in most. I decided to go with that surgery because his only other alternative was going to be to place an Shunt in his head for the rest of his life and I didnt want that I just wanted him to do one surgery & pray to God that that is it. The ETV has a 90% failure within the first 3 months & by the grace of God Jordon has passed his 3 month mark and everything is fine. It has a 60% chance of failing within a year, Im just praying we make it to an year without doing another surgery. But the point of the Hydrocephalus fund is to help raise money to find an CURE for hydrocephalus without surgery because this will be a life-long problem for anyone who gets it & not only babies in Jordons situation can get it, anyone really can... Car accident, simple slip & fall, & a lot of older people get it. Im just trying to educate everyone on it because before this happened to my son I didnt ever think anything like this would happen to me or my family & I knew nothing about a lot of things but I was thrown head first into making very serious decisions very quickly. So please click on this link hawalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1098265&lis=1&kntae1098265=AA9605B5980F49C5BED826E146455F84&supId=409853690&team=0&nmv=true and donate to #TeamJordon as we fight to find an cure for #Hydrocephalus. You can sign up to walk with us on Saturday, November 8, 2014 or you can simply donate. Every $1 counts but if you do not have an $1 to give please help me spread the word. Our goal this year is $500 and I know we can do it. Thank you all who have already donated I appreciate everything very much. And if you dont do anything at least take 1 minute of your day and pray for my little Jordon. Thank You & God Bless !!!!!!!!!
Posted on: Thu, 11 Sep 2014 14:17:45 +0000
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